Short and sweet post for our Kate:
Mommy can't sleep, can't eat, is beyond scared, but ready for tomorrow...it is a necessary step towards bringing you home. Kate will be having her Glenn surgery with a tricuspid valve repair..she goes back before 8am and we won't see her until late afternoon. Please keep Kate in your prayers...we love you more than words can express, Kate!
Monday, September 17, 2012
Monday, September 10, 2012
Stop Scaring Us Miss Kate!
September 8, 2012 - 12:30am
When the phone rings at this hour, things are not good..this was the case again this past early Saturday morning. Kate had coded again. She did not lose her heart rate this time, it was low, but still there. She went into respiratory arrest and required 3 minutes of compressions. She came back though and when I arrived her vitals looked similar to when I had left earlier that day. They decided to start her on more sedatives and keep her paralyzed to give her body a rest.
Around 3am, she started having some arrythmias and episodes of dropping her heart rate and oxygen saturations. This continued on and off on Saturday. They decided to change out her breathing tube and found that it had an obstruction, so she was not get all possible air flow. They suspect that was the major cause of her code.
Sunday was a better day for Kate...arrythmias decreased and no major heart rate drops. They did a head ultrasound and thought they saw something suspect, so that had us concerned. She seemed like herself and was moving all extremities, but if something was going on with her head, that would keep her from surgery.
Monday was a normal day for Kate...she had no arrythmias, no heart rate issues, no oxygen desaturations and her head CT came back with good results..bleed was getting better, not worse! So surgery is still on for next Tuesday as long as Miss Kate cooperates this week and stops scaring mom and dad!
When the phone rings at this hour, things are not good..this was the case again this past early Saturday morning. Kate had coded again. She did not lose her heart rate this time, it was low, but still there. She went into respiratory arrest and required 3 minutes of compressions. She came back though and when I arrived her vitals looked similar to when I had left earlier that day. They decided to start her on more sedatives and keep her paralyzed to give her body a rest.
Around 3am, she started having some arrythmias and episodes of dropping her heart rate and oxygen saturations. This continued on and off on Saturday. They decided to change out her breathing tube and found that it had an obstruction, so she was not get all possible air flow. They suspect that was the major cause of her code.
Sunday was a better day for Kate...arrythmias decreased and no major heart rate drops. They did a head ultrasound and thought they saw something suspect, so that had us concerned. She seemed like herself and was moving all extremities, but if something was going on with her head, that would keep her from surgery.
Monday was a normal day for Kate...she had no arrythmias, no heart rate issues, no oxygen desaturations and her head CT came back with good results..bleed was getting better, not worse! So surgery is still on for next Tuesday as long as Miss Kate cooperates this week and stops scaring mom and dad!
 |
| About 36 hours after her code |
 |
| Sweet dreams for baby Kate |
Friday, September 7, 2012
Acceptance and Answers
The rest of August was a month of acceptance for us...Our sweet Kate was not coming home until after her next surgery. We didn't know when that surgery would be, and would it be a valve repair, a valve repair/2nd stage surgery (Glenn), or just the 2nd stage surgery. We just knew that our main goals now were to keep her stable on the ventilator, work on her feeds and monitor her brain bleed. She needed to grow to at least 5kg (11 lbs) for her Glenn surgery. The weeks of August moved slowly, but Kate did well for the most part. She had her ugly moments, but overall the doctors were pleased.
Kate had a CT scan of her brain on August 20th and it showed that her bleed was significantly smaller and was barely visible on the scan. Prayers were answered and she was cleared to have heart surgery. We still don't know the long term impact of the bleed, but it was so great to hear that it was resolving, there were no more seizures and she was awake, alert and moving all extremities!
We received some answers when Kate had her cardiac catheterization on August 30th. This involved threading a tiny catheter up her groin artery to her heart and injecting various dyes to measure pressures in the arteries and veins around her heart and lungs. They also examined her leaky tricuspid valve. The results were positive from the cath. She would be ready for her Glenn at 12 weeks old and her tricuspid valve was more of a mild leak, not a moderate leak. Kate's surgeon informed us that he would not do a valve repair unless he feels it necessary on the day of her surgery. The will do an Echo of her heart when she is back for surgery and make the determination at that point.
Kate hit her goal weight of 5kg in early September and is now scheduled for her Glenn surgery on September 18th at 12 weeks old. She is getting big and looks the best she has ever looked. She is tolerating her feeds and is much more aware of her surroundings. She loves to listen to her music, watch her mobile and even watches a little TV! Please pray for Kate for a smooth surgery and successful recovery!
Kate had a CT scan of her brain on August 20th and it showed that her bleed was significantly smaller and was barely visible on the scan. Prayers were answered and she was cleared to have heart surgery. We still don't know the long term impact of the bleed, but it was so great to hear that it was resolving, there were no more seizures and she was awake, alert and moving all extremities!
We received some answers when Kate had her cardiac catheterization on August 30th. This involved threading a tiny catheter up her groin artery to her heart and injecting various dyes to measure pressures in the arteries and veins around her heart and lungs. They also examined her leaky tricuspid valve. The results were positive from the cath. She would be ready for her Glenn at 12 weeks old and her tricuspid valve was more of a mild leak, not a moderate leak. Kate's surgeon informed us that he would not do a valve repair unless he feels it necessary on the day of her surgery. The will do an Echo of her heart when she is back for surgery and make the determination at that point.
Kate hit her goal weight of 5kg in early September and is now scheduled for her Glenn surgery on September 18th at 12 weeks old. She is getting big and looks the best she has ever looked. She is tolerating her feeds and is much more aware of her surroundings. She loves to listen to her music, watch her mobile and even watches a little TV! Please pray for Kate for a smooth surgery and successful recovery!
Monday, September 3, 2012
August 3, 2012 - Another close call
Kate had been seizure free all week and was doing much better...heart function was good despite her leaking tricuspid valve and we were working on weaning down the vent again. On this day, she seemed off to me though. I couldn't put my finger on it, but I just wasn't feeling as positive this day. I left the hospital around 8:30 that night to get some sleep before morning rounds. At 11:20pm, a PICU nurse called me explaining that Kate was coding again. What?! I remember getting instant chills and my heart was pounding so fast as I threw on any clothes I could find. She goes on to tell me that Kate was ok after 5 minutes of compressions and that her heart was working on its own. The heart surgeon got on the phone and says that something happened with her breathing tube, causing shock to her system and the cardiac arrest..
The nurses couldn't believe how fast I got to the hospital that night..I had to get to her as fast as possible..she had to be ok..her brain couldn't handle another stint on ECMO...when I arrived she was pale, not too puffy, but had a high heart rate in the 190s (normal for Kate at this point was 160s). I sat in her room all night praying for her heart rate to come down and to not see any seizure activity. My prayers were answered...Kate fought through and her heart rate settled and we saw no new seizures.
This incident, along with Kate's previous arrest, provided the doctors enough experience to see that Kate's ventilator was still necessary...her heart was too fragile in this Norwood physiology along with her leaking valve to handle the extra work load of completely breathing on her own.
The nurses couldn't believe how fast I got to the hospital that night..I had to get to her as fast as possible..she had to be ok..her brain couldn't handle another stint on ECMO...when I arrived she was pale, not too puffy, but had a high heart rate in the 190s (normal for Kate at this point was 160s). I sat in her room all night praying for her heart rate to come down and to not see any seizure activity. My prayers were answered...Kate fought through and her heart rate settled and we saw no new seizures.
This incident, along with Kate's previous arrest, provided the doctors enough experience to see that Kate's ventilator was still necessary...her heart was too fragile in this Norwood physiology along with her leaking valve to handle the extra work load of completely breathing on her own.
 |
| Kate earlier in the day |
Sunday, September 2, 2012
July 27-30, 2012
Kate successfully came off of ECMO only 48 hours after her code. By no means was she out of the woods, but it was a huge relief that her heart tolerated coming off of ECMO so quickly. But she was still having seizure activity despite being on anti-seizure medications. They told us it was to be expected for a few days from the first seizure, but they could be causing the bleed to spread, so they needed to be under control ASAP. Once we were at 48 hours of seizure activity, the doctors wanted to insert a pressure monitor (called a Codman) into her brain. As if things weren't bad enough, now they want to make an incision in my baby's head, drill into her skull and insert a catheter into her brain..the incision was not huge...but freaking scary. This stayed in her head for a few days, but she never had increased pressure, thank goodness. She stopped having seizures after 4 days and her bleed was not getting any larger. Her EEG showed brain function and she was responding to touch and moving all extremities.
 |
| EEG leads on her head and poor left arm with seizures |
 |
| Looking drunk |
 |
| Codman incision |
July 26, 2012 - The 2nd Day that Changed Our Lives Forever
Craig and I thought our baby girl was going to leave us..
She had been stable on ECMO all night, but then at around 8am, she slowly lifted her left arm bent at the elbow and started moving it rhythmically...it didn't even register to me at first that it was a seizure. Immediately the room turned chaotic as they called for EEG monitoring of her brain and a head ultrasound. Within 2 hours we were being told that Kate had a major brain bleed with frequent seizure activity. The bleed was most likely caused from the trauma her body endured with the code, but it was being worsened by the blood thinners they need to use with the ECMO machine to prevent clotting of the cannulas. We needed to get her off the ECMO machine as soon as possible. She had just coded 24 hours before...how could her heart be strong enough to do all the work again so soon??
Craig and I spent a couple of hours in the waiting room just crying and praying...she needs the heart and the brain to survive but both were sick..her surgeon kept telling us that he felt her heart would be able to come off ECMO...all I could think about was that it was over and I would be saying goodbye to Kate soon..
She had been stable on ECMO all night, but then at around 8am, she slowly lifted her left arm bent at the elbow and started moving it rhythmically...it didn't even register to me at first that it was a seizure. Immediately the room turned chaotic as they called for EEG monitoring of her brain and a head ultrasound. Within 2 hours we were being told that Kate had a major brain bleed with frequent seizure activity. The bleed was most likely caused from the trauma her body endured with the code, but it was being worsened by the blood thinners they need to use with the ECMO machine to prevent clotting of the cannulas. We needed to get her off the ECMO machine as soon as possible. She had just coded 24 hours before...how could her heart be strong enough to do all the work again so soon??
Craig and I spent a couple of hours in the waiting room just crying and praying...she needs the heart and the brain to survive but both were sick..her surgeon kept telling us that he felt her heart would be able to come off ECMO...all I could think about was that it was over and I would be saying goodbye to Kate soon..
July 25, 2012 - The Day that Changed Our Lives Forever
After dropping Jacob off at a friend's house for the day, I was driving to the hospital to see Kate. I was excited since I had gotten to hold her the day before and work on her pacifier with her..I was hoping to do the same again..Then I received a phone call from the nurse practitioner telling me that Kate was being re-intubated due to respiratory distress and oxygen saturations in the 30s. I couldn't believe this was happening to my baby and drove so fast to get there to see her.
As I ran into the PICU unit, I came around the corner to her room and saw a huge amount of surgery gear carts, purple people and Barb...instantly I felt sick..I knew it was not good. I could barely focus on what Barb was telling me..that Kate had coded, needed compressions, but was still alive and was being put back on ECMO. Barb had called Craig right after I talked to the nurse practioner on the phone to inform him of Kate's code so he was on the way..
I was taken to a private room to wait for Craig and Dr. Fiore to complete the ECMO procedure..the only thing I remember about those moments I had alone, was crying and shaking uncontrollably. How could she be fine the day before and near death the next?? The doctors had no answers to this question immediately either.
We finally got to go see her after a few hours..she looked nothing like the girl I was holding the day before..VERY pale, extremely puffy and the 2 ECMO cannulas were coming out of her neck this time. We could see where they had done compressions on her chest. It took 62 minutes to get Kate onto ECMO from the time she coded. Now we had to wait and see if any of her major organs would be affected. We were even more scared than her surgery day.
As I ran into the PICU unit, I came around the corner to her room and saw a huge amount of surgery gear carts, purple people and Barb...instantly I felt sick..I knew it was not good. I could barely focus on what Barb was telling me..that Kate had coded, needed compressions, but was still alive and was being put back on ECMO. Barb had called Craig right after I talked to the nurse practioner on the phone to inform him of Kate's code so he was on the way..
I was taken to a private room to wait for Craig and Dr. Fiore to complete the ECMO procedure..the only thing I remember about those moments I had alone, was crying and shaking uncontrollably. How could she be fine the day before and near death the next?? The doctors had no answers to this question immediately either.
We finally got to go see her after a few hours..she looked nothing like the girl I was holding the day before..VERY pale, extremely puffy and the 2 ECMO cannulas were coming out of her neck this time. We could see where they had done compressions on her chest. It took 62 minutes to get Kate onto ECMO from the time she coded. Now we had to wait and see if any of her major organs would be affected. We were even more scared than her surgery day.
July 3 - July 24, 2012: Recovery
Kate was on ECMO for 5 days after her surgery...but she came off of it with the first wean attempt so prayers were answered. It was a grueling 5 days filled with worry, many tears and stress beyond belief, but she was proving to be quite the fighter. The next steps in her recovery included closing her chest, getting off the ventilator, weaning drugs and starting feeds. Closing her chest was completed a few days after coming off ECMO and feeds were started at a slow rate. She did well at weaning off the ventilator for a while, but hit another road block that next weekend. With the feeds increasing and her vent rate being decreased, it was proving to be too much work for her heart.
Kate seemed to need to take things slower, so that's what we did. After another week, she did come off the ventilator, weaned off many of her meds and was eating on and off..I even got to hold her finally, and we both loved every minute. We finally felt her recovery was moving along and there was talk of moving her to the "step down" unit of the hospital..one step closer to the front door.
Kate seemed to need to take things slower, so that's what we did. After another week, she did come off the ventilator, weaned off many of her meds and was eating on and off..I even got to hold her finally, and we both loved every minute. We finally felt her recovery was moving along and there was talk of moving her to the "step down" unit of the hospital..one step closer to the front door.
 |
| Just off of ECMO |
 |
| No breathing tube! |
 |
| No nose cannula! |
 |
| Holding my sweet girl |
July 2, 2012 - Norwood Surgery Day
We arrived at the hospital early that morning to spend some time with Kate before surgery. She had already been moved to the PICU when we arrived. They let us hold her for about an hour before the purple people (surgery team) came to get her. Craig let me hold her the whole time, and I'm sure I cried the whole time. Holding your child, knowing you are sending them into a major open heart surgery, was even more heartbreaking than I ever imagined. We were so scared and had no idea the emotions we would endure on this day.
They took Kate from us around 8am and told us we wouldn't see her until that evening. We waited in the general surgery waiting area, but quickly asked to be moved. Seeing people in there waiting for their kids tonsil surgery and many kids running around, made the wait even more difficult. I wished we were just there for a "simple" surgery. We were moved to a more private waiting area, where we waited for our hourly updates from our surgeon's assistant, Barb.
There were many hours of prep time, putting Kate under and getting all of her lines in before incision was even made. Barb finally told us that incision was made around 11:30am and she was being put on the bypass machine. The bypass machine does the function of the heart and lungs, while the surgeons stop the heart for surgery. Her heart was stopped for approximately an hour while he worked. The surgery took all afternoon but she only had to be on the bypass machine for that hour. She came off of it fine and surgery went as planned. We were told it was completed around 5:30pm.
They settled her back in her room and we were allowed to come back to see her around 7pm. She looked so pale and her chest was still open but covered with a plastic cover. We were relieved to see her, but we only got to stay with her a short time. Within that hour, we were back in our waiting room because Kate was not doing well. Her heart rate was very high and her blood pressure was very low. They monitored her for hours with very limited updates for us.
About 1:30am, Kate's surgeon came to update us. He told us that she did not look good and he felt it was time to put her on the ECMO machine to give her heart a break. Her blood pressure was dangerously low so he wanted to be very cautious and get her on the machine before she could potentially code. I have never cried so much in my life or felt so helpless. Why was this happening to our baby?? Being put on life support??
Putting her on ECMO took about an hour. It is something you never want to see you child on...2 large cannulas (plastic hoses) attached to her heart through her open chest with her blood cycling through to a machine that oxygenates her blood and pumps it back into her body. She was so pale and puffy b/c her kidneys were not working well. At this point, we were scared and exhausted.
So at the end of this day we had an 11 hour and 8 hour stretch of not seeing our sweet baby Kate...and she was on life support. I never knew it was possible to feel as much despair as I did that day.
They took Kate from us around 8am and told us we wouldn't see her until that evening. We waited in the general surgery waiting area, but quickly asked to be moved. Seeing people in there waiting for their kids tonsil surgery and many kids running around, made the wait even more difficult. I wished we were just there for a "simple" surgery. We were moved to a more private waiting area, where we waited for our hourly updates from our surgeon's assistant, Barb.
There were many hours of prep time, putting Kate under and getting all of her lines in before incision was even made. Barb finally told us that incision was made around 11:30am and she was being put on the bypass machine. The bypass machine does the function of the heart and lungs, while the surgeons stop the heart for surgery. Her heart was stopped for approximately an hour while he worked. The surgery took all afternoon but she only had to be on the bypass machine for that hour. She came off of it fine and surgery went as planned. We were told it was completed around 5:30pm.
They settled her back in her room and we were allowed to come back to see her around 7pm. She looked so pale and her chest was still open but covered with a plastic cover. We were relieved to see her, but we only got to stay with her a short time. Within that hour, we were back in our waiting room because Kate was not doing well. Her heart rate was very high and her blood pressure was very low. They monitored her for hours with very limited updates for us.
About 1:30am, Kate's surgeon came to update us. He told us that she did not look good and he felt it was time to put her on the ECMO machine to give her heart a break. Her blood pressure was dangerously low so he wanted to be very cautious and get her on the machine before she could potentially code. I have never cried so much in my life or felt so helpless. Why was this happening to our baby?? Being put on life support??
Putting her on ECMO took about an hour. It is something you never want to see you child on...2 large cannulas (plastic hoses) attached to her heart through her open chest with her blood cycling through to a machine that oxygenates her blood and pumps it back into her body. She was so pale and puffy b/c her kidneys were not working well. At this point, we were scared and exhausted.
So at the end of this day we had an 11 hour and 8 hour stretch of not seeing our sweet baby Kate...and she was on life support. I never knew it was possible to feel as much despair as I did that day.
 |
| ECMO machine |
 |
| Tree of drugs |
 |
| Sweet Kate |
Subscribe to:
Posts (Atom)